Neurosurgeon Appointment...Again

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 10/7/2011 1:53 AM (GMT -6)   
Well, third time's the charm, I hope.

I finally see my Neurosurgeon again today. I have only seen him once, at the beginning of my treatment and since then its been months. They cancelled on me twice, and then two weeks ago I had to cancel due to my car breaking down!

I'm just so sick of this pain, and I am sick of being able to do the things I want. I am going to try and be very specific at my appointment, because if they feel that my condition has not changed and that I have no real alternative treatments at my disposal--like surgery--I am going to ask them about if they think I should apply for SSI benefits. I haven't been able to work since December, and I can't even do things like go to college classes. It's really distressing for me to have to think about applying for SSI and admitting that I am 'disabled'...but I just really think that is the case at this point.

I hope my condition does get better, and I pray I get a lower pain level one day, but I am starting to think that this is my new normal. I think I will eventually find something that will help my quality of life, but I doubt I will ever get back to my 'normal' level of pain that I had before last year. I honestly don't know what it is like to live without pain, even for a day. I've always had back problems since I can remember, and it has always caused me chronic pain even though some most of my problems typically don't cause pain on their own. (I was treated for scoliosis pain for years even though it supposedly hardly ever causes pain.) So I don't expect to ever be without ANY pain. I just wish the severity of it would be dialed down so that I could live at least a bit more...normally/comfortably.

If I didn't live with my father right now, I'd probably be out on the street on worse. So I really feel for those of you who have only your own income to rely on when you fall ill. It is a tough fight as it is, let alone having to deal with financial burdens.

Anyhow, I am going to post what my Neurosurgeon appointment results in when I get home. This visit is basically to see what my next step is since I went through 3 epidural injections without any pain relief. Anyone have any suggestions on what I should ask/talk about to the doctor during the appointment? I have already read the 'questions to ask your doctor before surgery' type articles, so I guess I am just looking for advice more tailored to my situation where I don't think my doctor is considering surgery at all due to the medical complications. So yeah, any advice or suggestions on what I should bring up or stress would be helpful!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/7/2011 1:24 PM (GMT -6)   
Hi, this is nini/Kathy, it is important to explain exactly what you have in your post.  How you want your pain to be at a tolerable place.  That is all any of us cp patients have.  I am 12+ years into being disabled, the years leading up to this were no picnic either.
 
I do think you should ask your neurosurgeon or your gp about referring you to a pain management specialist.  Make sure when you do, this pm doctor prescribes, not just injections and happy thoughts.  I myself never had much good done with neurosurgeons, many of them have a god complex, I am not sure why but over the years I have seen many, they were all the same.  Please find a good pm doctor.  Thats when your life will get "normal" because taking the meds, doing some exercise when possible, maintaining the best mind set you can.  What you used to do, you can no longer do.  Find things that make you happy, they are out there, its a matter of rethinking who you are, what you can do.
 
Good luck, and take care,
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 10/7/2011 3:44 PM (GMT -6)   
Hi misterkatamari,

I'm sorry to hear about how severe the "new normal" is. Fortunately, I can still work (and fortunately because I do so mostly from home), but one day, that may be too much.

I want to emphasize a point made by Kat, that many surgeons have "god complexes". Some are eager to make patients candidates for their own studies and I've recently had a run-in with such a doctor.

I also want to add that my father's surgical procedures overall made his (scoliosis-based) pain worse and not better. So even though surgical options can help, they don't always... and can sometimes make things worse.

I read a study a few months ago that 85% of lower back spinal surgery either yields no benefit or makes the pain worse. I'll try to find the link if you're interested, but whatever the surgeon recommends, be sure to carefully research the procedure and its outcomes.

For example, nerve ablations carry the following issue: if the nerve is getting pinched by vertibrae with degenerated disks, narrowed neuroforamen, etc., the ablation will still be beyond the point of pinching. In my father's case, the ablated the nerve as it radiates out beyond the spine, but the root remains and continues to cause him pain.

He also tried to have some tissue botoxed -- but the consequence there was that it killed off some of the muscle and/or motor nerves that were helping support his spine.

Good luck and I hope you find an effective treatment!
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Medicalkid2
Regular Member


Date Joined Oct 2010
Total Posts : 147
   Posted 10/7/2011 8:17 PM (GMT -6)   
Ew Neurosurgeons are not fun. My Internist was going to refer me since she thought surgical intervention would be good some time down the road if my disc doesn't go back in and I said I didn't want an orthopedic/neurosurgeon butchering my neck at 18 years old...I'm studying pre-med and I work with some nurses occasionally and they all say neurosurgeons have the biggest ego's and God complex's but they are just as liable to screw up as any doc. My dad has 2 lumbar herniations and a cervical herniation in the same spot as me...his orthopedic was honest about expectations and the sheer invasiveness of fixing a cervical herniation...

Side note; I'm glad to hear someone say make sure the PM doc prescribes and doesn't just do injections because thats what I hear from so many people! I'm going in for my first injection soon and I believe it will help but you can't expect 0 breakthrough pain...since I'm in therapy as well I'm glad I have something to take as it can be pretty painful...glad my physical therapist and doc agreed on that.

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 10/8/2011 11:04 AM (GMT -6)   
Thanks everyone.

I finally got to my appointment and got some more definite information that is helpful--even if it isn't really all that great of news. Basically, the Neuro said that my herniations were in fact caused by my scoliosis, which I had been told was minimal and would never really cause me pain and wasn't worth monitoring really.

Anyhow, apparently my scoliosis is continuing to progress regardless of the fact that I am no longer growing. In addition, its curvature is severe enough already that it caused the herniation at the place of the highest degree of curvature. The upper curve 'over corrects' its self down lower like an S shape, causing some of the lower discs to then herniate as well.

Soo, he said he is really hesitant about surgery and would never do it himself. He said that's because discectomy or similar procedures would be risky with the scoliosis, and it would be difficult to get to the worst herniation without getting at the bone. So he can't recommended surgery, however, he wants me to see a specialist in Pittsburgh who specifically preforms neuro/orthopedic surgery on adolescents and young adults with scoliosis. He also said that regardless of the other herniations, the scoliosis itself is significant enough to warrant continuous monitoring by a professional like that.

So it sounds like this guy was being really straight forward with me and didn't try and coax me into anything undue. At least he admitted he wasn't qualified in that department to make an informed decision on it. So I have to meet with this specialist and see if he would even consider any surgical methods on it, and also to have him examine and monitor the progression of the curvature.

The other issue, however, with the surgery is that he does not believe that all of my pain is from one source. He says the L1-2 shouldn't cause the outter thigh/hip pain, and so he is wary that it could be one of the lower herniations. Since it is sort of a hard process figuring out what exact 'injury' is causing what, it is also hard to recommend a surgery because there is no sure way it is going to 'fix' anything. Could be some of the severe pain is from a lower disc, basically.

He said however if I were able to get some sort of procedure done to the worst disc, I would probably see improvement. However, it obviously isnt for sure. So, it just sounds really risky. I'm 22, so they're thankfully really hesitant to jump into surgery. My family doctor is adamantly opposed to me having any spinal surgery, so I am going to go back and talk with him too and see what his opinion is. Obviously he isn't a specialist, but its won't hurt to hear him out.

The neuro also said he'd sign off for sure on temporary disability benefits...but the thing is that I doubt I qualify for that. The reason being that the benefit in my state cover part of your lost income, but you have to have made so much money to begin with. I was a waiter making just over minimum wage, and I don't meet the minimum requirements.

SO, I still have no job or income and will have to wait for this other doctor to MAYBE say I can get surgery and that it MIGHT help me--and then I have to wait to actually have it done and see if I actually do feel any better. Meanwhile, if I don't get any of those results I will have just went over a year without any income at all.

So I am thinking of going ahead and applying for SSI. I haven't worked long enough for SSDI, so its my only real option. I'm going to talk with my doctors about it and maybe call the neuro's office again if I need to make sure he would be ok with backing me on that front. Because what he said was that I could probably get better if I had surgery. Could, probably, and if are not quite the words you're looking to hear when it comes to spinal surgery. lol!

Hopefully the specialist in Pittsburgh can tell me more, but I am not going to wait until then to talk to the SS agent about SSI because it could be over a month before I even see the other doctor...maybe longer.
--Patrick, aka Misterkatamari

I'm active on several boards. Main issues are: Chronic Pain due to Scoliosis & 2 Herniated Discs, possible DDD and/or arthritic facet joints. Also active in the Depression/Anxiety boards. Meds include: Prozac 40mg, Xanax .5 mg, Tramadol 50mg

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” - Joseph Campbell

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 926
   Posted 10/8/2011 3:23 PM (GMT -6)   
HI Patrick,

It sounds like you found a frank and legitimate doctor. My father's scoliosis is in the lumbar area and mine is cervical-thoracic. He is now in his late 70's and in severe pain, pretty much unable to get out of bed except for brief periods. That's been the case for more than a decade.

In my case, my scoli is only in the 20 degree range, and never caused me any problems until I was in my late 30's. I was in a bad car accident in 04, which damaged my right hip. That forced me to live biased to the left: how I sit, walk, etc.. The asymmetric wear eventually started to amplify the scoliosis curve.

So, regrettably, scoliosis does progress over one's lifetime. Given its location in your case, you might also find some pain relief from inversion tables. Further, core muscle building may help both in terms of taking some pressure off your spine and also help reduce the rate of degeneration -- but you should see a specialist about the best way to go about such training in order to not make things worse.

I'm personally interested in what the Pittsburg specialist has to say -- if you do go to see him. I am quite cynical about spinal surgery, but it may nevertheless be a risk I will have to take one day.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 10/8/2011 5:11 PM (GMT -6)   
I tried different therapy when I was around 18 in order to get my right side rebalanced. I favor my left in all things, and it is over worked and has the worst pain even without herniation. So they tried series of exercises under what my doctor called McKenzie Extensions. It did help the pain, but it didn't actually cause me to normalize my posture or dominance. I also wear a wedge in my shoe under my left foot, but I have done that for years also.

I also did core exercises until I started to have my current severe pain. So its been over a year and I have gained weight and lost the strength in my core--so no doubt that hasn't helped.

But yeah, I am optimistic about the visit with the other specialist, but I don't really expect too much. I'd have to very convinced by his opinion to consider surgery, because it just seems like a very uncertain thing. My alternative, though, is to try some different ways to manage the pain though--because right now it is still unmanageable under my current medications.

--also, I am having an awful pain day today. It was bad yesterday, but now I feel even worse. I have arthritis type pain in all my joints. Like knees, elbows, feet, and hands. I haven't been diagnosed with arthritis in them, but its definitely there just usually isnt too bad. So that doesn't help on top of the back issue though. It seems like it is due to the weather/pressure today or something.

Post Edited (misterkatamari) : 10/8/2011 5:14:44 PM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, June 23, 2018 2:01 PM (GMT -6)
There are a total of 2,974,558 posts in 326,190 threads.
View Active Threads


Who's Online
This forum has 161288 registered members. Please welcome our newest member, Annkat.
346 Guest(s), 3 Registered Member(s) are currently online.  Details
kmomof6, Sinmiedo, Geekything